Discussions By Condition: I cannot get a diagnosis.

26 year old female, 10 years of neck, arm, shoulder, nerve pain,HELP!!!

I'm an active 26 years old woman, I present symptoms similar to TOS but Doctors immediately dismiss it, most of which I believe is attributed to lack of empathy, concern and knowledge concerning this condition. One physician may order a test and the next may prescribe yet another medication. This has gone on for years and this type of care isn't working for me!!!! I've had painful, burning throbbing arms, neck and shoulder pain for 10 years, I've seen so many Drs I'm losing track FRUSTRATED!!!! Please give me your opinion, anything will HELP!

I'm a very independent woman almost to a fault, I'm stubborn and I don't particularly like asking for help. It is a struggle everyday to adjust to the fact that there are certain things I can’t or should not be doing. I'm rebellious by nature and when someone tells me I can’t do something it makes me want to do it even more. Weather I'm aware of it or not these traits are hurting me physically, mentally and emotionally. My husband has been my foundation for support, he has been the voice of reason and comfort when I'm scared, emotionally exhausted, angry and I don’t know what to do next.

My Story….When I was 17 years old I began experiencing dull throbbing pain, deep inside my arm. I had burning and positional weakness when using my left arm at shoulder height or higher. I'd have 3-4 months with no pain, and it'd come back lasting 1-2 months. I dealt with this for years, I started calling these episodes “flares”. Over the next few years it became a “normal” expected occurrence in my life. At 20, I was in a car accident and I was knocked unconscious. I woke up with a compound fracture to my L1, 3 hairline fractures in my pelvis and 17 stitches on my right eyebrow. I broke the windshield with my forehead and received 17 stitches above my right eyebrow. I'm aware of the trauma but experienced no changes concerning my “flares”.

The flares started interfering with my work, I'd drop glasses or plates. I attributed my pain to a pinched nerve. It hurt to sit around, I became accustom to avoiding positions that caused pain. I exercise daily, movement and exercise was the only thing that provided any relief.At 22 I went to a Chiropractor, going 2-3 times/week for adjustments. The pain progressively got worse, after 9 visits the radiating dull ache, weakness and sharp shooting pain moved to my right arm as well, it advanced down my chest along my collarbone into the base of my neck. I got numbness in my shoulders and hands when I slept. I woke up every 30min. with my arm numb and aching. They were so painfully weak ,I'd use the other arm to reposition the weak numb one. I was consumed by fear, frustration and anger, I'd wake up my husband to move the pillow and pull up the covers. Both of my arms hurt, taking off my shirt was excruciatingly painful. The Dr. told me he could not help me, and discharged me. I was not sleeping because of the pain, and I still had no Health Insurance, I was a wreck, and in ten times more pain than when I walked into his office.The flare lasted for another month or so, like the others it went away and I returned to my optimistic self. Its a strange thing, the way the mind works,I forget, or make myself forget how much it hurt, how destructive and detrimental it's on me mentally and physically.I married adam in 2007 and was added to his health insurance. I got a tonsillectomy on 10/25/2007. it knocked me off my feet, I was 2 weeks into an intense flare. They always present with different and new symptoms, the only consistency they have is inconsistency. They progressed, I was having arm spasms every 15-30 minutes all night long. I would wake up in a gasp, with my arm in spasm. It was extremely painful and intense it felt like my Humerus was partially dislocating from the socket. I'd have to roll my arm back into place to get the muscle spasm to relax. This continued for three unbearable nights, I was afraid to fall asleep. I was still working, moving helped keep my mind off the pain. On the third day of the spasms I was going to shower and was unable to lift my arms above my shoulders. I was sleep deprived, an emotional wreck, scared and very angry about the situation, I started bawling on the ground in the bathroom alone and afraid. I didn't call my husband because I felt like this was my problem and I could handle it, instead I called my work to notify them I would be late.This was the first time I felt completely incompetent, I had lost control to physically achieve my goal. Even with the numbness, spasms and pain I always felt sense of being in control, to live my life the way I wanted. I got used to ignoring and accepting the pain the same way a woman deals with monthly cramps, only I had no physical signs to validate what I was feeling. Something as simple and insignificant as not being able to pull my hair up combined with the intensified emotions from sleep deprivation created an overwhelming sense of failure, hopelessness and worthlessness. I finally got ready for work by sliding my clothes on, feet first. I got 2 blocks from my house and slammed into the curb because I was unable to turn the steering wheel. I then admitted defeat by calling Adam, bawling my face off I headed home. I started frantically calling neurologists.I scheduled an appointment with a Neurologist, my husband accompanied me to the appointment, both for support and because he had witnessed these spasms and was a more reliable source of information considering my emotional, mental and physical state. The Dr. Said“You know I have looked over your file, what do you think I can do for you?” I fell apart, it felt like someone had just punched me in the gut, I had a lump the size of a baseball in my throat, with tears in my eyes I looked at my husband,he could see that was his queue. He described what I was experiencing with thorough and remarkable accuracy, the Dr. listened as Adam recounted what he'd witnessed and my experiences over the past seven years. It took me a few minutes to regain my composure, I didn't want to cry or show weakness in the Doctor’s office. I didn't want to come off as a weak winey woman complaining about nothing. I do understand that most of what I am experiencing are symptoms, so I am unable to produce physical signs to gain credibility in the eyes of others. That makes this that much harder for me to seek help and convince others I'm not blowing this out of proportion, this is real and I really do need answers. He was quick to give me medication(Skelaxin and Lyica) and send me on my way. We left the doctor’s office with no answers, I was so angry and tired. The Lyrica and Skelaxin worked miracles, the flare was gone within 48 hours. My muscles were still very sore, it felt like I had excessive amounts of lactic acid build-up from the spasms I'd been experiencing. Once again my life returned to a pain free state and I convinced myself it was not that bad.I understand there is going to be no quick fix for my condition but the treatment from the Doctors, the blatant lack of empathy, and the mental toll this is inflicting on my life, is just as bad if not worse than the pain. I've been in and out of Dr. offices,I'm getting no answers, the Dr.’s have their minds made up before they even see me.Over the past few years the flares have come and gone, I'm experiencing numbness, aching and weakness in both of my arms when I sleep. The most intense pain occurs at night. Its hard to pull up my covers and turning over is difficult. The inconsistency of the signs and symptoms have made it hard to determine whether the medication is having any positive effects, considering the flares come and go anyway. I've experienced 4-5 episodes of Vertigo and endured excruciating headaches this past year that are so intense they knock me off my feet. I don’t know if this has any connection to the flares. I have a bump on the base of my skull predominately on the left side that increases in size and sensitivity during a flare. For 7 years I've attributed this to a pinched nerve. Lifting my arms over my head produces sharp jolts of pain, the joint feels unstable and inflamed, it does not glide but instead feels rough and crackly. Sedintary activities: sitting in a car, relaxing in a chair, or typing on a computer cause the pain increasing gradually until I feel like I'm going to scream. Taking medication makes me feel as though there is something “wrong” with me, accepting defeat. I don't want to dull the pain and ignore my body. If I'm going to take medication for the rest of my life that is something I've prepared myself for, but I'm not going to accept it until Drs can provide justification for it. I'm young, healthy, and very stubborn, I refuse to accept medication with no explanation other than to prevent the symptoms. I know I may be partially to blame for the duration of these flare because I refuse to take anything until the symptoms(or my husband) surpass my desire to feel normal and healthy. Ironically enduring excruciating pain and restless nights brings me more of a sense of comfort normalcy than surrendering to a temporary answer that may have negative effects in the future. I take meds. when the pain starts interfering with my life, but I will not accept them as the solution for the unknown.

4 Replies:

I am sorry I can not help you with a diagnosis however I do know exactly hoe you feel. I am also 26 and have gone trough almost the exact same thing. When I read your story all I could think was this sounds like me. I was active in sports as an adolecent untill about 16 when I started getting pain in my shoulders. The Dr diagnosed it at tendenitus and sent me to physical therapy. The ultrasonic massages (I think) were so painfull they felt as if my joints were on fire. It has progrssevly gotten worse over the years now I have flair (yes that is what I call them too) that start at my temple and go all down one side to arm and chest. They can last any were from two days to a week. I have had at least six different diagnosise for it from TMJ to strained muscles and have been on several differant medications. It has been so bad at points I have gone to the ER and been given nuebain but it bairly touched it. I just wanted to let you know that your not alone in this and I hope some one can help.

Sounds to me like you may have a nerve impingement in your C- spine somewhere. To find this your Nero must do an MRI. I had similar symptoms and had a herniated disc at the C5/6 level. I had an operation called an ACDF to remove the disk and fuse the area. It worked wonders. No more pain!!!!

Hello, I too read your story thinking that sounds like me. However, the initial causes of my pain, ie, two separate car accidents are distant thoughts now, it is the chronic pain syndrom that I now suffer as a result of long term pain and suffering. The nerves swell to larger than normal due to the pain receptors etc being on red alert, the nerve endings are then flooded by chemicals, because the surface area is larger than normal the amount of chemicals absorbed is greater too, this cause the nerves to send the wrong messages. Therefore, when I am in apin, and that is constantly, it may be a pain that is actually caused by my disc impinging upon my sciatic nerve or my nerves misfiring. When the nerves misfire, the pain I feel is intense and is real, but I may feel pain in one area that originates in another, all I know is it is agony! Yes, my life was spent not giving in to medication, but in the end for the sake of achieving a bit of quality of life, I had to, for my sake and my family's. Now I do take medication as a preventative as well as in response to pain, three different sorts! I wish you luck in sorting out your problems but please don't feel giving in to medication is defeat, it is for the greater good! Your sanity and that of your husband is more important.Take care.

Have you ever had an MRI. I had these same problems, when if flared up the only relief was to rest my arm on my head. It was odd having to work that way. When I finally got an MRI I found that I had 3 herniated discs pressing on my spinal cord from C5-C7 to the degree that I now have scarring and nerve damage that will never go away. For years I was told it was a pinched nerve I slept wrong, or just an irritated nerve from pushing or pulling wrong. I finally went to a specialist and was told to have an MRI immediatey this of course was after an ER visit one night because the pain was SSSOOOOO severe I hadn't slept in 3 days. If you haven't had one have an MRI at the very lest of your upper Thoracic and Cervical Spine areas to check.Sam